Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Hi there I am responding to your note about your son having other issues besides BPES. My daughter, Kirsten, now 7 yrs old was born with a cardiac defect, delayed speech due to palate problems, is slightly hypotonic and her gross motor skills are about 9 months behind average. Her photos are under Kirsten Parsons. Kirsten has been very lucky. The hole in her heart closed spontaneously. She had surgery to her palate when she was 4 yrs old, it took years to diagnose why her speech was so delayed. She used to use makaton sign language, but since her surgery to her palate and loads and loads of speech therapy, she is now easily understood. Her gross motor skills are still behind, but she always eventually does what her friends do e.g hop on 1 leg, ride a bike. She attends a normal school and is doing well. Get as much information and advice about your son's issues as you can. Go for second opinions if you need to, it will be a slow process but keep at it. I was always told that Kirsten's problems were not associated with her BPES. Her chromosome tests done in Belgium showed a deletion at FOXL2, where as the majority of people with BPES apparently have a mutation. She has no other chromosome abnormalities as far as we have tested. I hope my story has been useful to you. Your son may be completely different to my daughter, but I can relate to your concerns as a mum. All the best. Regards (Colchester, UK) > > > From: Harvey <happyappykd> > Subject: Re: blepharophimosis my daughter > blepharophimosis > Date: Friday, 8 January, 2010, 5:13 > > >  > > > > Hi , > Before my daughter, Paige, had her surgeries I asked the nurse if we could could take a tour of the clinic. The nurse showed us the pre-op rooms, the special " pajamas " she would wear for her surgery, the mask she would wear to help her fall asleep (and the stickers she could have to decorate it), the juice and crackers she could have when she woke up, and the post-op room where we would be with her when she woke up. She explained exactly what would happen and that she would sleep through the entire procedure. Paige was 4 when she had her surgeries and she understood quite a bit. Another neat thing was that they gave Paige some fruit flavored chap-stick to rub on the inside of her mask so that the " funny " air that they used to put her to sleep wouldn't smell so medicine-like. >  > I also bought a play doctor kit and picked up some real latex gloves and mask so that we could play doctor and bascially act out what she would encounter on her surgery day. Anything you can do to make Molly feel a little bit in control of the situation is great. Books are a great suggestion too! >  > Also, another idea for after her surgery (in case she has additional surgeries) is to make a photo album of everything. I took pictures of Paige with her nurses and doctors as well as Paige in the car on the way there, in the waiting room, recovery after surgery, etc. It really helped Paige to process and remember her doctor and all of the people who helped her to be able to see better. I did it all online using Kodak and I was able to put captions under the pictures to make it really nice for her. I also used it again this year in Paige's kindergarten class as a way of explaining BPES and why Paige's eyes looked a little bit diffrent. Paige had been getting some questions from her classmates so the teacher allowed me to come in to speak to the class. Paige was so proud to share her photo album. >  > I hope some of the things I did inspire you. Explaining it all can be overwhelming to another adult so it's even more so with a 3 year old! Best of luck and I know she will do great! >  > > North Carolina, USA > > > > > > From: wendy673755 <haribo.molly@ btinternet. com> > blepharophimosis > Sent: Sat, January 2, 2010 4:31:20 PM > Subject: blepharophimosis my daughter > >  > > my daughter molly is having the slings putting in on the 18th jan im a little worried about it as its her 1st op and i dont know how to tell molly whats happening as she is only 3, any ideas would be helpfull, also i had another baby girl phoebe 7 weeks ago i was a little worried that she would have bpes but she has not.. > Quote Link to comment Share on other sites More sharing options...
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